Pixel Droppings

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a bunch of archives of incredibly important government datasets like maternal mortality statistics are about to be deleted forever. in a regime where they're known to fudge numbers, we can't trust a lot of the data coming from them to not be altered. open source backups like those found on data.world are vital to being able to verify that the data coming from our government is still intact and not altered. and they're about to delete all of it.

i don't know if we need to start a petition or what. nobody seems to fucking care. there are millions of users on data.world and yet nobody is raising the alarm bells and it makes me feel like I'm going insane. somebody needs to do something. i don't know what to do. it feels like more and more of this world is being destroyed and dismantled. it's not only US centric data, either! it's all sorts of countries from around the world! and they're about to fucking delete everything.

the only things that won't be deleted are private companies who happen to use the paid version of their platform (which isn't accessible data to the open source community; some people have just been using their service to host their own data on privately)

and the kicker? this announcement was made... via an AI generated blog post. so not even any sort of human touch. just a generic, soulless announcement made by a soulless human about to take a wrecking ball to one of the more important websites that exists on the internet.

an example of some of the things that will be deleted on July 11th:

https://www.re3data.org

There are over 3500 respectable data repositories on one respectable global registry; to a researcher there’s no point in data existing if not findable; if you’re trying to find a new home for your dataset, start there

To use this metaphor, imagine if in order to access help for your nearsightedness, you had to endure years of people not believing you're nearsighted because they don't believe anybody is near sighted, and you are just faking it for attention and the privilege of always sitting up front. And if you do manage to get help, you have to go to the eye doctor every 30 days for new glasses because they're not allowed to give you a prescription for longer than that. And the government is creating an artificial scarcity of glasses because they think too many people are lying about needing glasses. And when you try to push through and you make a bunch of mistakes because you can't see, it's all your fault. And because you can sorta see when you squint your eyes really hard, you're expected to do that all the time while keeping up with everybody who can just see well.

Someone: But have you considered that they [something that applies to many disabled adults]

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The FBI cut the phone lines during the 1977 disability rights sit-in. Then they turned off the hot water.

They locked the doors from the outside. One hundred and fifty people were trapped on the fourth floor. Half of them used wheelchairs. The government assumed they would leave.

Kitty Cone was thirty-three. She had muscular dystrophy. Her muscles were failing, but her logistics were flawless. She knew how to organize people.

The federal government had promised to sign regulations protecting disabled Americans from discrimination. The policy was known as Section 504. They printed the promise on paper. Then they stalled. Without a signature, it was just typography.

The protesters entered the regional Health, Education, and Welfare building in San Francisco on a Tuesday morning. They took the elevators to the director's office. They brought sleeping bags and catheters. They informed the staff they were not leaving until the law was signed.

By sunset, the police surrounded the exits. Kitty sat near the windows. She organized the floor plan. She assigned committees for security and sanitation. She kept her medication in a small cooler.

According to federal memorandums released decades later, the strategy to end the occupation relied on medical attrition. The building was not equipped for long-term habitation. The FBI calculated that a population requiring ventilators, specialized diets, and daily medical aides would voluntarily evacuate if the environment became sufficiently hostile. They instituted a blockade.

The blockade went into effect immediately. No food deliveries allowed. No medical supplies permitted through the lobby. Guards stood at the main doors checking identification.

Kitty's muscles deteriorated faster under the physical strain. She couldn't walk. When the phone lines went dead, the fourth floor lost contact with the press. The government waited for the quiet.

Kitty dropped to the floor. She realized the barricades were designed for standing adults. The police had blocked the hallways at waist height. They hadn't blocked the linoleum.

The floors were covered in cigarette ash and spilled coffee. She dragged her body through it. She crawled under the barricades to reach the restricted elevator shafts and unguarded offices.

She carried notes in her pockets. She found a single working payphone the FBI missed. She called the local news desks. She called the mayor's office.

She crawled back. When her arms failed, someone pulled her by her ankles. The Black Panthers heard the news reports. They crossed the police lines with hot meals. The FBI could not stop them without a riot.

They shut off the elevators, so she crawled.

The occupation lasted twenty-five days. It remains the longest non-violent occupation of a federal building in American history. On April 28, the Secretary of HEW signed the regulations without a single alteration.

The protesters left the building the next morning. They went back to their apartments. The Rehabilitation Act regulations laid the groundwork for every accessibility law that followed. The HEW building still stands on United Nations Plaza. The elevators run on a schedule. The doors are heavy glass.

Kitty Cone: the woman who crawled under the barricades.

Source: Kitty Cone's oral history, Bancroft Library.

Verified via: National Museum of American History.

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do you want a "luxury" experience? well, you'd have to pay for that luxury, and since the company sure doesn't want to pay its employees; the cost would fall to the consumer.

After seeing another post talking about how little-known a lot of details about power-assist devices are, I thought I'd make this post describing them. There's more types than most think, and each has different strengths and weaknesses.

Rear-mounted / Push assist

Examples include: Alber Smoov, Empulse R90, Permobil SmartDrive (not pictured)

Benefits: Compact and efficient, easy (relatively) to put on and take off, stays within existing footprint of chair so great for tight spaces and indoors. You push and steer as normal, with extra force behind you.

Drawbacks: Most struggle with loose ground and gravel. Folding frames will require an adapter. Smartdrive specifically has faced a lot of tech problems in the last two years including controller recalls, but used to be highly appreciated.

Function note: Braking and steering is still on your shoulders, arms, and hands. Controllers may be small (but multiple options tend to exist for each model). Removal and attaching while in chair requires torso twisting.

Best used: Indoor and mostly level outdoor. Good for going about town and getting up hills or through long days.

Front-mounted / Pull assist

Examples include: Rio Mobilty Firefly, Empulse F55, EZ Ride (not pictured)

Benefits: The best assist for rough terrain and the outdoors. Generally also the fastest, depending on the model. Push-free - motor does all the work. Drawbacks: Take up a lot of space - difficult indoors and on public transport. Not suitable for all frames. Folding frames will need an adapter.

Function note: Requires holding arms aloft for extended periods.

Best used: Long distance or outdoor. Good for getting across grass (with various models of different wheel sizes for different terrain).

Power assist wheels - Push-propelled

Examples include: Yamaha NaviOne, Alber E-Motion, Quickie Xtender (not pictured)

Benefits: Intuitive! They move the same way the chair moves without power assist, and you control everything with your arms and hands just as you would without it. They effectively multiply the force of each push, meaning you can go further with far less force and effort needed. Works on folding chairs. Some models have features that can help with difficult areas like heavily cambered footpaths or safely descending steep hills.

Drawbacks: Manual (unassisted) propelling is harder due to the weight of the assist itself. Some models temperamental about actions like pop-ups and wheelies. Cannot put on or take off this assist while in your chair; many leave them attached.

Function note: Best used to reduce shoulder injury/wear and fatigue; still requires arm function to use, however some models can compensate for single sided weakness with "hemi mode" adjustments.

Best used: Daily life indoors and outdoors; wherever you'd take your chair normally.

Power assist wheels - Joystick-operated

Examples include: Empulse M90, Alber E-Fix, Yamaha NaviGo (not pictured)

Benefits: Controlled completely through joystick, but wheels still usable without assist engaged. Allows both manual propelling and joystick use. Works on folding chairs. Some models have features that can help with difficult areas like heavily cambered footpaths or safely descending steep hills.

Drawbacks: Manual (unassisted) propelling is harder due to the weight of the assist itself. Some models temperamental about actions like pop-ups and wheelies. Cannot put on or take off this assist while in your chair; many leave them attached.

Function note: Joystick positions can be awkward on some models. Propelling requires additional effort when wheels are off.

Best used: Daily life indoors and outdoors; wherever you'd take your chair normally. Sometimes used as alternative to powerchair for people with low-moderate positioning needs who cannot use a powerchair for some reason (such as not having access to a wheelchair-accessible vehicle) - comes with drawbacks.

Other types

In order: Benoit Light Drive, Klaxon Twist, Empulse R10 caregiver assist

Different models of power assist that don't fit the above categories do exist. The Light Drive works by applying force directly to the wheels, and is somewhat similar to power assist wheels to use. The Klaxon Twist is able to be configured in different ways; it can be rear- or front-mounted. The Empulse R10 is not designed for a wheelchair user to operate at all, it is for caregivers; the wheel is further under the chair to stay out of the way of their feet, with a controller mounted on the push handles.

for example idea that powerchair / their users always worse off disability wise than manual wheelchair / their users. or that powerchair = easy use.

am full time wheelchair user & rn use my custom manual wheelchair with power assist all time. but in past used group 1 / 2 powerchair (a non custom powerchair w big base & big plastic leather seat that technically cushioned. mine be technically group 1 bc need the transportability n take apart (bc know eventually need get it to literal other side of globe) but it closer to group 2 powerchairs than those rly small collapsable 50 lb folding power chairs) & that manual wheelchair at same time. so have enough experience say that idea above, simply not true.

bc of my disability & seating positioning needs, sitting in that kind of powerchair be really uncomfortable n painful n exhausting.

mine have medium height backrest, which be not enough for me. even if it do have higher backrest & headrest would not be able sit in for long because it simply not supportive enough. it not keep body in place. it not designed keep off pressure on my skin n muscles n bony spots.

it also incredibly bumpy, every vibration be transport into feet n leg n rest of body to neck etc.

all these reasons mean actually need spend more energy n effort in those kind of powerchairs to keep body up n sitting, not to mention properly sitting w right posture that not give pain or worsen disability or bad pressure.

because of that, can only tolerate use it for 1-3 hours at time max.

n the collapsing easy transport 50 lb type folding powerchair, which glad help some people, simply would not work for me, even with one with technically backrest that cover entire back + headrest that be going around disability influencer instagram rn. it does not n will not work for same reason - except more intense because it even less supportive on body.

versus. my custom manual wheelchair, which not meet all my disability needs, n give me pain n symptoms, n complain abt it lots, but even with that!! it infinitely better than my powerchair n **is actually usable**.

because it built for me, the backrest high enough to support body + shaped n contoured in way that keep body in better place, including on two sides / left n right. n same for headrest!

my cushion not put as much pressure on my skin, esp bony places am prone getting pressure sores on, n (mine rn not do this well, which be bad on my body, but there options that do) shape in way that keep butt & thighs in place so not slide n friction (which can also create pressure sores) or not need significant energy keep in right place.

my wheels also be designed to keep ride as smooth as possible (sth special abt spokes), so my body not suffer as much from all the vibration.

(n even with these, still exhausted n in pain n need be in bed lots to recover from, yes, “just sitting” in wheelchair. my non ambulatory friends w complex disabilities who use custom group 3 powerchairs, aka those fancy complex rehab ones that do tilt n recline n lift etc, say same abt theirs too! being in wheelchair can be very exhausting!! especially because some of our disabilities that make us need wheelchairs.)

n yes, am someone who cant rly push self for much in manual wheelchair. need power assist and/or someone push me (often both!! bc my power assist be exhausting n heavy!) to properly get around or else not able leave house at all (not exaggerate). even with this!!! my manual chair still work better for me than power chair.

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sometimes it not just manual vs power, sometimes it also about (or sometimes more about!) custom vs non custom!

some people functionally cannot use non custom wheelchairs, some people cannot use non custom wheelchairs at! all! (people have literally died directly bc airlines broke their custom group 3 powerchairs n not replaced in time!)

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So are

colostomy bags

Diapers

insulin pumps

Oxygen systems

rollators

hearing aids

compression garments

prosthetics

FREEDOM AIDS

- service animals

- noise cancelling headphones/ear defenders

- wheelchair attachments

- fidgets

IT’S DISABILITY PRIDE MONTH YALL

Kimberlé Crenshaw was the Black feminist scholar who coined the term "intersectionality." You can read her initial article coining and describing the theory "Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics" (1989), her follow-up article expanding on it "Mapping the Margins: Intersectionality, Identity Politics, and Violence against Women of Color" (1991), and a (shorter and easier to read) interview with her about what she meant and what she thinks about it "Kimberlé Crenshaw on Intersectionality, More than Two Decades Later" (2017).

Adrienne Rich was the lesbian feminist scholar and poet who coined the term "compulsory heterosexuality" in her article "Compulsory Heterosexuality and Lesbian Existence" (1980).

Roland Barthes was a French literary critic who coined the term "death of the author" in his essay "La mort de l'auteur" (The Death of the Author") (1967). This one is 6 pages long.